We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.
Our services
Telephone Support
Our telephone support line is open 10am - 4pm, Monday to Friday
Email Support
You can reach us via email at any time, and we aim to respond as quickly as possible
Events & Annual Forum
We organise multiple events around the country
CaverBuddies
On going peer support when you need it most
Professional Lectures
Presentation and research events around the country
Meet Ups
Join us, and members from your local area for a coffee & chat
Therapy
Therapy for adults, children and carers to work though concerns
Webinars
Online meetings, presentations & chats providing information & advice
Carers Support
Support, chat and advice for carers of those with cavernoma
What our members say...
A world without CAUK doesn’t bear thinking about!
Get in touch with us
Remote Learning during Lockdown using Game Consoles
The return to remote teaching has prompted concerns about whether all families will now have the hardware they need to be able to access education. However, one short term solution, at least for pupils who still do not have access to a laptop but do have a gaming console.
Lockdown 2021
In light of further coronavirus restrictions put in place across the UK we wanted to let you know that CAUK is here for you. We understand that the current situation will cause further anxiety, pressure and uncertainty for many of our cavernoma community during already challenging times.
Happy Holidays 2020
As the year comes to a close, find out what we have in store for 2021!!
How Cavernoma are formed and develop (Part 5)
In part 5 of our Science of Cavernoma series, David White explores how Cavernoma are formed and develop.
How the gut influences Cavernoma Formation (Part 4)
In Part 4 of our Science of Cavernoma Series, David White explores how the gut influences Cavernoma Formation.
The Changing Face of Neuro Rehab with Steve Cairns
Having recently attended and presented at the World Congress for Neuro Rehabilitation, Steve Cairns gives his take on the common perceptions for rehab strategies and outcomes
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for